This degree work explores the experience of living with and coping with Amyotrophic Lateral Sclerosis (ALS), a chronic, orphan and fatal disease. Through research conducted with ALS patients, their circles of care, and health professionals involved with the disease, this study seeks to understand the disease in all its complexity. It examines the moments prior to diagnosis, the moment of diagnosis itself, the various therapeutic paths employed, the relationship with the health system and the pharmaceutical industry; as well as changes in corporeality, routines and domestic spaces. In addition, the importance of the creation of networks and associations such as the Association of Amyotrophic Lateral Sclerosis of Colombia (ACELA) is highlighted as a fundamental element for the collective coping with this disease. This work is based on the conceptual frameworks of medical anthropology, especially in the understanding of chronicity and the health-disease-attention and care process, using an ethnographic approach to dive into the complex world of living with ALS.
